The Word Escapes Me: Tackling Aphasia Myths

People with aphasia are silent. People with aphasia can’t communicate at all. Aphasia only affects the old. These myths and more are tackled in chapter three of Ellayne Ganzfried and Mona Greenfield’s new book, The Word Escapes Me.

Even professionals come into their first experiences with aphasia holding certain myths in their mind, and it’s experience that not only puts aphasia into perspective but shines light on the fact that people are so much more than their condition.

Myths Before Experience

Take for instance the opening essay by Mari Timpanaro, a social work intern. She admits that she didn’t know much about the condition until she started working with people with aphasia. “How were we going to form a working relationship if the dialogue was one-sided?” She quickly discovered that it wasn’t one-sided at all; that there was communication at play.

I guess you could say these amazing people put me in my place quickly. All of these worries vanished over my first weeks. I learned that I had been assuming too much, that I was guilty of identifying them through their disability, not through their strength of character.

It’s understandable that myths exist since the general population has a shallow understanding of aphasia unless they come in direct contact with the condition — through personal experience, helping a loved one, or a professional capacity. It receives scant coverage in the news and few celebrities use their platform to educate the public. But once a person has direct experience with aphasia, they realize that their assumptions are just guesses at what aphasia entails and not facts based in reality.

Myths vs. Experience

But the essays in this chapter are not just about myths. There is also the flip side: the hidden or lesser discussed reality of aphasia. Melissa DeLong, another social work intern, points out that aphasia encapsulates a fact of life: health issues can happen to anyone at any time. She summarizes a life lesson that she learned:

They know, perhaps better than many, that to accept one’s limitations is not to be weak. It is not to give up. It is to celebrate our humanness, to laugh at it, to have compassion for it, and to find, whenever possible, ways to work around it. The clients at MCA are remarkable in their ability to do all of these things.

Myths Meet Reality

If the myths are all about the fears associated with aphasia, the silver linings are the stories that come out of the actual experience. Yes, there are a lot of changes and yes, there will be struggles. But as Amy Samuelson, LMSW, states:

Two people with good will and intention, wishing to reach one another, work to find ways to reach out. Sometimes single words, drawings, pictograms, written words (when possible), guesswork on the part of the therapist (when permitted by the client), and pantomime are part of the new language. In process, stories are built, emotions are expressed and exchanged, and therapeutic bonds are formed.

The myths do not contain that hope. They don’t account for that good will and intention. And it’s important not to lose that thought when separating out aphasia fact from fiction.

What are the biggest assumptions people make about aphasia or people with aphasia?

This is the second installment of our online book club. You can still read the first post in the series, and you can enter the conversation at any time.

Join this online book club! Copies of The Word Escapes Me can be purchased through all online book retailers including Amazon. You can also purchase the book directly from Balboa Press, and discounts are offered on bulk orders.

Image: Ann Wuyts via Flickr via Creative Commons license